Primary Immune Tribune
May 2013
IDF 2013 National Conference
Join Us Back to Baltimore! June 27-29

Don’t miss the IDF 2013 National Conference in Baltimore, Maryland! It is where IDF began in 1980 and where the first two IDF National Conferences were held in 2001 and 2003. We return to Baltimore in 2013 for an experience you will not want to miss!

Join over 1,000 attendees, for this incredible opportunity for individuals and family members living with primary immunodeficiencies to gain knowledge about their diseases. The IDF 2013 National Conference will feature 65 sessions presented by world-renowned immunologists and healthcare providers, and life management professionals. Participants will learn about advancements in diagnosis and treatments and gain skills needed to better manage their healthcare. Many opportunities to meet other patients and families and talk with our generous sponsors in the interactive exhibit hall will be available throughout the conference.
 
Visit www.idfnationalconference.org to learn more and to register today!



Last Chance to Donate an Item to the THINK ZEBRA! Auction
Deadline is Sunday, June 2

Want to donate a great item for the Silent Auction at the IDF 2013 National Conference? From weekend getaways and rounds of golf to autographed sports memorabilia and VIP event tickets, great donations from our community make the auction a successful fundraiser. CLICK HERE to submit the online form to tell us what you will donate!

The deadline for your item to be included in the official auction brochure is Sunday, June 2.



Medicare IVIG Access Act Celebration
A Night to Recognize Those Who Made it Possible

April 25, 2013 marked a night of celebration for the primary immunodeficiency community. The Immune Deficiency Foundation (IDF) welcomed stakeholders to Washington, DC for a reception to celebrate the Medicare IVIG Access Act becoming law and recognize the commitment of the community who worked for years to see this feat accomplished.

IDF was thrilled to welcome Representatives Kevin Brady and Doris Matsui to the celebration and present each of them with a special zebra award to commemorate this occasion.

CLICK HERE to read more



President & Founder of IDF, Marcia Boyle, Named Inaugural Recipient of PSI President Award

Marcia Boyle, President & Founder of the Immune Deficiency Foundation (IDF) was awarded the inaugural President’s Award from the Patient Services, Inc. (PSI). Marcia was recognized by PSI for her leadership in the patient advocacy community. Representative Doris Matsui, a dedicated advocate for the patient community, presented the award to Boyle at a reception in Washington, DC on Wednesday, April 24, 2013. CLICK HERE to read more.



IDF Presents Educational Materials at the Newborn Screening and Genetic Testing Symposium

Celebrating 50 years of newborn screening, the Association of Public Health Laboratories, the Centers for Disease Control and Prevention, the International Society for Neonatal Screening and the Georgia State Public Health Laboratory sponsored the 2013 meeting of the Newborn Screening and Genetic Testing Symposium in Atlanta May 5-10, 2013. Representatives from state health departments and from across the globe came for six days of education and discussion on newborn screening issues, breakthroughs and new technologies.

IDF was invited to present a poster on the development of educational materials for patients who are identified through newborn screening for SCID. The IDF publications "A Guide for Parents Who Receive an Abnormal Screen," and "SCID: A Parents Guide," offer parents assistance in understanding the meaning of an abnormal screen for SCID and the meaning of a positive diagnosis of this condition. IDF invites state health departments who are screening for SCID to use the educational guides in their follow up protocols so that parents have an understanding of this rare condition.

CLICK HERE to read more about the symposium and to view the full poster.



Looking Back on Another Successful Awareness Month
April 2013 Awareness Month Recap

IDF celebrated 2013 National Primary Immunodeficiency Awareness Month this past April, in partnership with World PI Week, April 22-29. Overall, Awareness Month 2013 was a great success because more people learned about primary immunodeficiency.

CLICK HERE to read our Awareness Month 2013 recap on the IDF Community in Action Blog.



Since You Asked
IDF Question and Answer

Q:  Does climate play a role in CVID? Will I be prone to fewer infections in a warmer area as opposed to the colder climate in the north?

Q:  I am newly diagnosed with a primary immunodeficiency. What are some of the things that I should be doing, so I can be ahead of the game?

Click "FULL STORY" to see the answers to these questions.


[FULL STORY]



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